For those of you that follow my blog, I am very interested in advice…
As you know, I went to get a second opinion on my rheumatoid arthritis treatment because a family friend’s death illuminated the connection of methotrexate to interstitial lung disease.
Well, I went to a pretty renowned hospital and saw a very nice female (wow, rare!) rheumatologist who is not much older than I am. She was easy to talk to, smart, and, since she works in a research hospital, very up-to-date on the latest RAD research.
And get this, she wants me to try to go off methotrexate and see how I do with just Enbrel. Her reasoning was that a) I have valid concerns about MTX side effects, b) my last two liver tests came back high, and c) why not try it?
Granted, she hasn’t been my doc, so hasn’t seen me before my drug therapy or on bad days (it was a good day when I saw her). But she thought my treatment may be a bit unnecessarily aggressive.
If going off MTX didn’t go well, she talked about putting me on Azathioprine, which I know nothing about, but pulmonologists (lung docs) like better than MTX. Has anyone been on Azathioprine or have thoughts about it?
*It should be said that methotrexate causing interstitial lung disease is quite rare, and in many cases treatable. I am just a little sensitive about this because I had severe interstitial lung disease as a child. My lung doc says that I’m not necessarily at more risk than the average RA patient for developing ILD, but I’d like to play it safe.
But, of course, I’d also like my treatment to work.
I’m scared to death of getting off MTX when my current drug therapy seems to be working pretty well.
I also don’t want to be on MTX for the rest of my life…
My current doc brought me down to seven pills per week from 10 because of my liver, but I know he’d rather see me stay on the MTX.
I feel as though I have to decide on both which doc to go with (you can’t have two rheumatologists, apparently; they’ll just disagree on everything) and which treatment plan. And I feel like I have to decide by Sunday, which is methotrexate day for me.
Finally, how do you even break up with a doc who’s been kind, effective, and accessible? And should I? The new hospital offers more cutting edge care and is bigger, so my rheumy would be consulting with other rheumatologists and pulmonologists. I can also participate in research there. BUT, it’s further from my house and my new doc may be a little less accessible than my current one.
If anyone has advice on how to choose doctors, break up with doctors, or switch treatment plans, I would really love to hear it.
Angsty RAD blogwriter 😉
#1 by stinam on April 6, 2013 - 1:44 am
I’m not sure what to say about the meds. I have just begun my arthritis journey and my rheumy is taking a very conservative route seeing if the least amount will help before he adds anything more. My advice on Dr’s? Don’t rush yourself. You are in charge and you don’t have to place any unnecessary deadlines on yourself. Take your time making your decisions. You can also see two rheumy’s if you want, even if they disagree utlimately you’re the boss. You get to decide what to do and what works best for you between the two of them. Even if you stop the MTX and things go south there is no unwritten rule that says you can’t change your mind and go back on. Finally, as for Dr’s and breaking up. I don’t usually say anything, once I’ve decided to move on I just do. Maybe its because I’ve done it a lot but I don’t let my personal feelings color my choice of Drs, just because they are nice doesn’t mean they are always the best fit for me either. So I don’t say anything, I just stop making appointments and see who I prefer.
I always hesitate to give this much advice, take it or leave it, and I hope it was helpful. These things can be so hard emotionally when we’re not quite sure what is best. Navigating the waters of our health care can be difficult but you know yourself best. Trust in that! Good Luck!
#2 by My RAD Life on April 7, 2013 - 1:23 pm
Thank you so much for this thoughtful response. I think I needed to hear that there’s no deadline. It was such a relief to read those words. I think I will do my first doc’s recommended low dose of mtx this week and give myself time to think. It is a really tough choice – leaving a doc feels like a breakup!
Thank you for your understanding.
#3 by Andrew on April 6, 2013 - 6:00 pm
I “broke” up with my first rheumy and it was the best thing I did. He was kind but just didn’t get to know me or the impact of my treatments very well. He didn’t listen or ask questions but spent most of the time staring at the computer screen looking at test results. For me, having a strong relationship is so important. My new rheumy really spends time asking me what’s going on and she doesn’t discount what I tell her. The other reason for me to switch was that my first rheumy was in a clinic that was poorly managed and a real dump. The quality of the facilities and other staff was a big one for me. You’ll know when the timing is right.
I was on azathioprine for about 4 months but it didn’t help me so we went back to Arava. MTX is the gold standard DMARD with Arava being the most like it. Azathioprine and Cellcept are sometimes used for RA. They were developed as immunosuppresants for organ transplant patients. My rheumy and the research literature is pretty clear that combo meds of a biological along with a DMARD are the most effective. I was on biologicals alone for 3 years as I had a bad reaction to MTX. But my new rheumy wanted to add a DMARD. Everyone reacts differently and sometimes you have to try multiple combinations to find the best.
#4 by My RAD Life on April 7, 2013 - 1:27 pm
Thanks for all this info. We haven’t talked about Adara…maybe I will bring that up. Also, I’m glad to hear about your succesful breakup. 🙂 I’m really wrestling with the choice, because my current doc is so kind, but you’re right, there are so many other important factors.
Thank you again for your response. It’s always scary to try a new drug regime.
#5 by Andrew on April 9, 2013 - 5:56 am
You’re welcome. By the way, it’s Arava not Adara…the generic name is leflunomide. Scary indeed. I just found out that my rheumy wants me to stop Actemra infusions coupled with Arava. I don’t know what’s next but I’m guessing Rituxin. I wish you all the best in your decisions.
#6 by My RAD Life on April 9, 2013 - 11:03 pm
Ah, thank you. Why the change? Best of luck with the switch to Rituxin. I haven’t heard of that one yet…
#7 by Michael Garrett on April 20, 2013 - 12:49 am
How are you doing? I was an RA patient before and had consulted 3 rheumies. I’ve gone through various lab and physical tests, took different medications and diet, etc etc. My search for best RA medication ended when I tried stem cell treatment. I had it with my 4th doctor, Dr. Purita. The therapy went really well. Now, I am back to my usual life… I hope you get better soon too!